Children with hydrocephalus disease suffer during lockdown

Friday May 22 2020

Affected. Parents with children suffering from hydrocephalus disease attend a children’s function in Nakaseke District recently. PHOTO BY DAN WANDERA

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By DAN WANDERA &EVE MUGANGA

LUWEERO/ENTEBBE- Several parents of children diagnosed with the hydrocephalus disease in Wakiso, Luweero and Nakaseke districts have decried the painful experiences their children are going through after failing to get treatment since a lockdown to control the spread of coronavirus was announced.

Hydrocephalus is a condition that occurs when fluids build up in the skull and causes the brain to swell.

Although President Museveni has since eased the lockdown and allowed some businesses to open, public transport, schools and religious assemblies are still not allowed to operate.

The President also maintained a 7pm to 6am curfew until early June as government monitors the coronavirus situation in the country.

The affected parents say, their inability to get public transport to take the sick children to hospitals, has compromised the health of their children.

Ms Milly Najjemba, a mother of a six -year old child diagnosed with the hydrocephalus disease says that she has failed to travel from Magoma, Nakaseke District to Cheshire Home at Katalemwa, Wakiso District where his son is supposed to undergo a review for his health since March when the national lockdown started.

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“I used to travel using commuter taxis. Through all this period, I have witnessed my son go through painful episodes helplessly, because we are unable to travel to hospital to get treatment,” Ms Najjemba said on Wednesday.

She said her son experiences constant headache, general body weakness which is worrying.

“My attempts to seek help from traditional healers did not yield any fruits,” she said.

But Mr Ntumwa Matovu, a senior administrator at Nakaseke Hospital said that they don’t ignore such patients and that they have always attended to cases of children suffering from hydrocephalus complications.

“It is true that such a health complication is curable, but requires particular specialised treatment. Medical personnel at Nakaseke Hospital register several cases for the hydrocephalus and do whatever is within their means to help, including the referral to possible places where the complication can be best handled,” he said.

He said that it is difficult for parents with children suffering from hydrocephalus to travel to Cure Children’s Hospital in Mbale District for specialised treatment under the current lockdown.

“When we get such cases, the medics at Nakaseke try whatever is within their respective means to help such children,” Mr Matovu said.

Ms Maymuna Nakalema ,a mother of a 4-year-old son in Katabi Town Council, Wakiso District says that despite failing to get medical care, they also lack food.

“My husband deserted us. I have four children whom I take care of. I have no job apart from digging and washing clothes around the village to survive,” she said.

Ms Patience Mbabazi, the director of Hydrocephalus and Spina Bifida Initiative, a body with a membership of over 80 parents of children suffering from hydrocephalus and spina bifida said that two children suffering from the syndrome have died due to lack of immediate medical attention during the lockdown.

“Most of our children have shunts inserted in them to help in regulating the overflow of cerebral fluids within their bodies. These shunts have to be monitored by medics to avoid blockage but it has been very hard for such mothers to travel to hospitals during this period,” she said

But Hajj Noor Njuki, the Entebbe Resident District Commissioner said that ambulances are available at his office to help in time of health emergencies.

“Some people don’t contact us for assistance and they keep blaming us. So, parents have to inform us and in case they don't, there's no way we can know," he said

According to Ms Mbabazi, Cure Hospital in Mbale is the only specialised facility in handling patients with hydrocephalus and spina bifida. “Parents with such children usually part with Sh950, 000 per operation but many mothers cannot afford it,” she said.

CURE Children's Hospital offers specialised treatment that includes surgical operation to drain the fluid from the brain, while others go to Ours Rehabilitation Centre in Mbarara which also offers similar services.

Dr Michael Ogwal, a medical doctor at Cure Children’ Hospital advised mothers to take foods or medicines that are rich in folic acid before conceiving.

Health workers say that about 60 percent of hydrocephalus cases in Africa are due to infections like germs.

Others are caused as a result of head injuries and tumours, among others, yet sometimes hydrocephalus develops when the child is still in the womb.

A research by Cure Children Hospital and conservative prevalence rates from National Institute of Health indicate that between 3,600 and 5,400 children in Uganda are born with or develop the condition every year.